UK Keratoconus Self-Help and Support Association

Hi

Let me introduce myself - My name is Manoz Joshi and I am 27 years old. I am currently suffering from keratoconus for nearly five years now and I normally wear a special hard contact lenses. Recently I had a very painful and sharp burst in my left eye and found out that there was a opaque that restricted my vision in my left eye. So I admitted to Selly Oak hospital for further assessment and the doctors gave me a few eye-drops to heal my left eye. The opaque had gradually faded away which is a huge relief for me.

Unfortunately I am very very sensitive to bright glare especially sunlight and I have to close my eyes all the time or stay in the shadow all the night. It gives a lot of headaches especailly in Spring and Summber. Thing is it got worse. I barely could not go outside when it is a bright day and I have to stay indoor.

Despite being informed that my my eye condition deteriorated, the doctor advised me to wear contact lens on my left eye to restore my sight back. I asked my doctor about my eye's sensitivity to the light and he was not very helpful. I admitted that Im sick of doctor keep put blue or white light my eyes with their special instrument and keep telling me that i will have eye surgery for cornea transplant for nearly 3 or 4 years now. I still wear a sun shade to reduce the glare but it is not helping me very much.

I have not attended to eye specialist for a while because they have not cure my eyes problem and I am very afraid of going back to eye specialist. I don't want to lose my sight because I am already lost one of my important sense - hearing. I have been profoundly deaf since I was born and I don't want to lost two senses.

Sorry for rambling too much cuz I need to get things out of my chest. I am sure there is some people have similiar situation like mine. Can you please give me any advice to restore my sight back and protect my eyes from sun glare.

Kind regards

Manoz Joshi aka fuzzythinking77

I had exactly the same problem, caused by my lenses being too large a diameter. this allowed the air gap at the front to be lost as the disease thinned the cornea, and allowed it to be sucked into the gap. thus the cornea stuck to the lens and rubbed. i had to have a smaller lens and leave it out for ten days to let the eye recover.
hope this helps
mike

Dealing with bright light or sunlight is hard for those of us with KC. I have spent a lot of money on sunglasses but I have never regretted it.

Initially I wore hard lenses and coped with bright lights by wearing a pair of sport sunglasses by Bolle. They are wrap around but have inter-changeable lenses - so I could wear a clear lens for dull days (looked a bit like safety specs), then a cinnamon tint ( for dawn and dusk) and gunmetal (for bright light). The advantage is that the wrap around helps keep out dust, wind etc all those things that make wearing lenses so hard.

Since my graft operation I can wear either soft contacts with the Bolle sunglasses. I do still find sunlight is a problem especially when I am driving. I can also wear glasses so I swop to prescription sunglasses. Sadly my prescription, despite a very successful graft, is not in the normal range of readily available sunglasses. I did find a company though that make "clip-ins", not clip-ons, to go with wrap around sunglasses. They are made by Rudy Project and though they also cost a lot I even coped with the classic Greek holiday last summer - blue sea, white sand and lots of reflected light!

There are lots of options to protect your eyes from the sun, so I suggest you see what you can find. I know wearing a hat or sunglasses is a bit of an image - and for me a bit of a young image! - don't pay a care if you can see well!!

Best wishes, Freddy

Hi

I have been wearing GP lenses for the last 15 years or so (I am 27) and have found that a similar condition has developed. I normally wear these for about 14 hours a day (more if I go out clubbing!) with no adverse reactions.

Over the last few years, my eyes have become more photophobic. Strobe lighting and sudden changes of light causes me to be momentarily blinded. Conversely to your experiences at the hospital, I found my opthalmist to be understanding and helpful. About a year ago, she recommended me trying a new (at the time) material for the GP lens that was coloured blue. This base tint meant a lot of the UV light was cut out and I found my eyes were more relaxed than they had been. As part of my normal KC condition, I wear glasses and contacts simultaneously. Due to this, I had a base tint and photochromatic lenses put in to my glasses and this helped the light issue further.

One downside to the above though is that you do get used to having the light protection and it does feel weird if I remove my glasses.

My own personal experience is that, as I am coping with the lenses, I do not need to consider an op at the moment. If this is also the case with yourself, I suggest that you contact the hospital and explain the situation again. Maybe try to see a different consultant or try a high street optician (I say this since my hospital opthalmist also works in a high street contact lens specialist) to see if anyone does work at the hospital as well. Perhaps a new face could lead to a better solution for you. Something needs to be done sooner rather than later and the quicker it is sorted the easier it will be for you.

Whether you see a different consultant or not, the blue contact lens did help me a lot so I would suggest you ask your opthalmist about the effectiveness of these.

Hope this helps.

All the best!
Ben